August 27, 2007

A while back, I started two separate blogs- one for my regular life, and reserved for talking about Fibromyalgia. Lately, it seems that the Fibro blog is the one that I’m writing the most in, but I really do need a place to just whine and cry.

Don’t have a lot of energy (or brain function) to say a lot. I’m a little afraid, because I have always been able to push myself to get in a couple of bike rides during the week. This summer, I’ve been down to one ride a week. Yesterday, I hurt and ached and was exhausted, but I did ride twenty miles. Today, I’m completely drained, hurting, and foggy. Am I getting to the point where I can’t ride at all any more? Lidoderm patches are helping somewhat, but I’m so frustrated- I have so much to do, but I’m not even answering the phone, because the thought of mustering enough energy to talk seems impossible. The pattern now seems to be that if I do anything physical, I pay for days afterward.

I’m going to go lie down now. I’m really sad and frustrated with all of this.

August 25, 2007

Arghh. Woke up this morning feeling so happy. Tom and I started the day slowly, drinking coffee and talking in bed. It felt so nice. Soon, the all-too familiar pain started sinking into my lower back, hips, legs and booty, and in the middle of our conversation, tears just started pouring from my eyes. The pain was independent of what was going on– I wasn’t focusing on it, it has an agenda all its own. It’s embarrassing to be smiling and chatting, then crying simultaneously. Tom massaged me for a few minutes, and I began to feel a bit better. I made myself hop out of bed and begin the day. It seems to work best best to pretend that nothing unusual is going on, but in the background is the dull noise of pain and depression.

August 24, 2007

Today is the day that I finished painting the bathroom. It’s now marked on my calendar, and I will celebrate this date on a yearly basis. Hopefully, I’ll get lots of presents. I’m going to Hallmark to see if they have some announcement cards that I can send out.

This may not sound like such a feat for a bathroom the size of a Saltine box, but for me, it’s the equivalent of performing open heart surgery using only a nail file and some Elmer’s glue. My body isn’t cooperative these days, so I had to work slowly and kind of schedule painting around my energy and pain levels. Also, I’m really bad at the whole wall painting thing, so it took almost ten days to complete this task. Seriously, the room is only about 4.5′ x 5.5′, but for me, it may as well have been the Taj Mahal.

At first, I decided to cheer it up by painting it a sunny yellow color. I didn’t realize how different it would look when I got the paint home, but when I finished, it looked like someone had urinated on all the walls. Ugly and depressing. Tom got the idea of trying to sponge paint over it, so I tried that. The result was that it looked as though someone, after peeing on the walls, decided to throw blobs of Crisco at them. That Crisco that’s semi-mixed with chunks of fake butter. They haven’t invented the term for this effect, but “vomit-inducing” is close enough.

I went to a different paint store. This one had a little light box where you could hold the sample up to different types of lighting to see how it would actually look. I settled on this blue color. Not something I would normally choose, but it looked really good under the light.

August 23, 2007

My self cure for Fibromyalgia is harmony. As soon as I attain harmony and balance in most facets of my life, I expect that this will go into permanent remission. It’s a plan, anyway. I’m not there yet, but I’m getting closer…

August 23, 2007

Yes, I’m being sarcastic. I hate this &*%@!# syndrome, disease, illness…whatever it is.

Today, I found out that my short term disability claim had been denied due to “lack of medical evidence.” What bullshit. My medical history looks like the Encyclopedia Britannica. I can appeal it, but I am so mentally and physically exhausted that I want to give up. And I’ll bet that’s just what they’re hoping I’ll do, so I’ll have to fight it.

I also called the FMLA people. FMLA only lasts for 12 weeks, max. That means that on September 22, I’ll either have to go back to work, or be fired. This makes sense to me, actually– after all, they do have a business to run.

As winter approaches, I find myself filled with dread (of the pain) and fear (of the future). In the past, my fibro really only kicked in to an unbearable level in the winter. This year, it’s much more random. I’ve been hurting off and on all year, and have reached a new level of exhaustion. This causes the depression to become worse, my stress level to go up, etc. You know the drill.

What do I do? How do I support myself? I can’t afford to keep insurance. I can’t afford to keep going to doctors looking for a miracle. I’d really like to go back in time and be the peppy, workaholic gal that I used to be. Since that’s not possible, I think I’ll go and take a nap. I’m so tired.

August 19, 2007

Today, I’m having a Fibromyalgia cease-fire. That’s the point I reach after a brief cycle of sadness, frustration and fighting the flare-up that I can feel burning inside of my body. I ache, I cry– internally, I’m screaming, “NO, NO, NO! Go away!” Exhaustion, pain and depression win out, but I’m fighting a little less now, and sort of learning to bend with it.

It’s like when my kids were babies– you know that a baby is going to do what a baby is going to do, despite your best laid plans. You carefully arrange the day– make the bottles, pack the diaper bag, dress Junior in his cute little outfit and set out for some activity. As soon as you reach your destination, he poops all over the place, and you have to leave. Plans are scratched, and you have to just go with the flow. With a baby, you understand. You treat him with love, no matter how much he may have screwed up your plans. With Fibromyalgia, my tendency is to want to spank the baby, yell at the baby, punish the baby, etc. I have no compassion for this syndrome.

That was how yesterday was. I was supposed to go bicycling, and I wanted to paint the bathroom. Instead, my body began screaming for attention with all of its aching, my mood started spiraling downward, and I was overcome with fatigue. At first I resisted it. Then I grudgingly succumbed to it. I napped, wrote in my blog, and cried to myself a little. I asked Tom for a hug. Later, we watched Gods and Monsters and went to bed. I felt awful for changing the day’s plans.

I really get trapped into this feeling of wanting to climb out of my body, wanting to die, wanting some sort of magic feeling to wash over me to make this all go away. It’s like slipping on a banana peel…I’m flailing about, trying to regain balance, dreading the impending fall. It’s always two steps forward, ten steps back.

So, today I’ve called a truce. I will be kinder to the enemy (Fibro). I’m going to learn how to actually befriend this unwelcome visitor. I’ve watered the garden (it relaxes me), made breakfast (a small, no-cooking one), postponed my big projects, and for the past couple of hours, I’ve been listening to music and painting–a picture, not the bathroom. Now, I’m tired, and I’ll rest. Tom wants to go cycling later, and I’ll try again.

(Reading over this, I realize that it all makes me feel so *gasp* middle aged.)

August 18, 2007

I woke up feeling just awful today. Before I even opened my eyes, I realized that my body ached all over, and depression just started wrapping its cold, gooey fingers around my brain.

Actually, I started getting kind of down yesterday– I did nothing more than go to the health food store and the grocery store, and by the time I got home, I was exhausted and hurting. I notice that Fibromyalgia puts me into this self-protective mode, and the usual joy I feel from meeting and interacting with people is just not there as much– takes too much energy, I think. Often, even the simplest tasks often become difficult ones. This all makes me so sad.

So, I woke up thinking about how much I hate this. How guilty it makes me feel. How my exhaustion keeps getting worse. How I can’t get in to see the rheumatologist until October, and how it won’t matter because he can’t do anything for me anyway. How I probably will not get FMLA from work. How I hate the anti-depressant I’m on, and how I don’t want to take any more than the minimal amount, because I don’t want to not feel like me– but boy, what a “me” I am sometimes. How I have no idea as to how to proceed from here. Oh my God, I’m whining. Get me out of here! I can’t stand being around myself today.

Tom and I were supposed to go bike riding today, but I’m just too tired. Gonna go nap.

August 13, 2007

Transferring this post from an old blog that I’m deleting.

Went to a pain clinic today. Doesn’t that sound like a training seminar for people who are into S and M? It’s actually for people who are trying to deal with chronic pain– it should actually be called an “anti-pain clinic” or something like that. Anyway, my doctor referred me, and it may be about the most helpful place I’ve gone to for learning to live with fibromyalgia.

After quite a bit of painful poking and prodding, he sent me home with a ten’s unit, prescriptions for muscle relaxers (which I won’t fill) and lidocaine patches, and three follow-up appointments for trigger point injections. Mostly, he sent me home with some hope. At this point, I’m grateful for even the smallest ray of that stuff.

August 13, 2007

Tom and I now jokingly refer to fibromyalgia as “That Whose Name We Dare Not Speak.” I even have a folder in my Internet bookmarks labeled that way, and in it I file useful information such as the link regarding alien abductions and fibro. Hey, it’s as good an explanation for this crap as any.

God, I hate this. I’m having such a bad day. I’m being such a whiner. I hurt and I’m truly sick of this. I’m determined to get on top of this mountain of symptoms and live with it in a positive, happy way, but sometimes that feels impossible. I want to live the Bruce Lee way, and just “be water”– you know, just flow with it. But this mountain is huge sometimes. I’m going to list this crazy set of symptoms here, just to get it out of my system:

Muscular Pain. This is pain that flows like lava through my body. It most often resides in my hips and booty, but it moves EVERYWHERE– lately, even in my face. It is a dull burn, and the intensity varies (like turning the heat up on a stove burner).

TMJ. I think this was caused by the Cymbalta I was prescribed. If I take it in the mornings, I’m completely wiped out by 2:00 p.m. (it makes me fall asleep at my desk). If I take it at night, I have insane, hyperactive dreams, and I grind my teeth. I remedied this by stopping the Cymbalta. The TMJ seems to be gone now.

Chronic earaches. To such a degree that I can’t turn my head. It renders me incapable of driving, and completely exhausts me.

Fatigue. It hits suddenly, and wipes me out. I’ll feel happy, peppy, and then sleepy. Come to think of it, y’know, Fibromyalgia is like having several of the Seven Dwarves inside of you– Sleepy, Dopey and Grumpy. But I’m learning to be my own Doc.

Fibrofog— I get reallly stupid with this. Dazed and confused. Forgetful and sad.

Depression. Who wouldn’t be depressed by all of this?

In addition, I’ve had all of these “female problems.” Pre-menopause, Endometriosis, chronic bleeding, etc. Ugh. Pretty.

I hate all of this. I hate how it’s changed my life, hate how it makes people now view me (although I try to keep it a secret) and how I often view myself. I’ve gone from a strong woman to a weak one. Professional to unemployed. Good, attentive mom to an “out to lunch” one. In short, I’ve become a mess.

I’m trying. I’ve read. I’ve been pro-active. Here are the things I’ve tried within the last few years.

At least ten hospital visits, and a barrage of tests and medications. At first, no one knew what this was. I was living in a little town in Arkansas, and everyone was thinking that there was something wrong with my heart, because I was mostly feeling the pain in my chest at that time. I believed that it was muscular, but it scared the hell out of me. I was given anti-anxiety medication, arthritis stuff, stress tests, an EEG, ERCP and a heart catheterization. This all went on for about four years. When I moved to a big city, and ended up in the ER there, I was diagnosed with fibromyalgia. Several specialists have confirmed this.

Ignoring it. This doesn’t completely work, but it really helps me to focus on other areas of my life. I will never just completely submit to Fibromyalgia. Instead, I try to to view it more as a temporary inconvenience. I WILL, in the end, kick this in the ass.

My General Practioner– forget it. He’s just said that I would have to learn to live with the pain. He did refer me to a quack, who gave me a copy of his book and told me to watch a movie called, “What the Bleep Do We Know.” I’m open-minded, but I consider this movie to be mostly a bunch of New Age crap. I can’t believe a doctor would consider JZ Knight (aka Ramtha) to be an expert on anything, especially quantum physics. Good grief!

Being my own health advocate. I did drive 3 hours away to see a doctor that I really liked- Mark Pellegrino. He has fibro, and is considered one of the country’s foremost authorities on it. We agreed at the outset that it was unrealistic to think that he could be my regular doctor, because of the distance. But after testing me, he prescribed Cymbalta and a sleep aid, and recommended two physical therapists in my area. I quit the Cymbalta because of the TMJ. I’m not taking the sleeping pills, because I don’t want to get into the habit. Besides, I’ll soon be unemployed from this, and I won’t be able to afford it. The physical therapists were both researchers and didn’t see patients.

Massage Therapy. This helps.

Positive thinking and creative visualization. I’m trying.

Bicycling. It feels so freeing, physically, to be on my bike. While I’m riding, I feel fantastic. I tend to overdo though. No more 30 mile rides!

Ear doctor. He wanted to refer me to a TMJ guy. Again, the expense is prohibitive, and frankly, I’m a little sick of doctors at this point.

Anti-depressants. As I mentioned, I was taking Cymbalta, but the cons seemed to equal the pros, so I stopped taking it. Now I’m trying Lexapro, but it’s too early to tell if it will help. If nothing else, it’ll probably keep me from walking into traffic when this becomes too unbearable.

Pain Clinic. This was the most aggressive treatment yet. I asked the doctor if he’d ever had a fibromyalgia patient who went into remission from this. He said, “My dear, my job is not to try to cure you. My job is to help you deal with the pain.” Hmmmm…so, he gave me the following:

A TENS Unit, which is this little device that I put on the area of pain, and administer an electrical current to it. It DOES help; however, it’s a tiny device, and my body hurts EVERYWHERE. I accidently fell asleep with it one night (you’re only supposed to use it for two hours at a time). I don’t know how long it stayed on (I assume it has some sort of automatic shut-off), but the next day, I went grocery shopping, and kept shocking myself when I touched the metal part of the cart. I think I was radiating an electric current!

Lidocaine patches, which are great for numbing pain, and a prescription for a muscle relaxer, which was so expensive that I couldn’t fill it. He said that my sciatic nerves are spasming like crazy because of the fibro.

Trigger point injections. He’s lined me up for a series of these, two each session. I had my first treatment last week, and the jury’s still out on the results. The shots hurt like hell (although sedation was offered, and I said no). I’m not sure if it was the shots that hurt, or the fact that the doctor pressed hard on the trigger points at my lower back, while injecting the needle into my butt. I felt worse for a few days later (which I read was normal), then I had some hours of painlessness, but it seems to me that while the shot made my lower back, hips and butt feel much better, the pain just decided to relocate to my upper back. A week later, I’m having enormous amounts of pain in my shoulders and neck. I keep getting headaches and face aches now, which may or may not be related.

I’ve decided to develop my own treatment plan, which includes the following:

Massage (when I can afford it)

Walking (I do this now)

Yoga (I’m signing up)

A more kind and gentle form of employment (looking)

Continue writing (good therapy)

Continue painting (see item #5)

A loving, patient-beyond-belief partner (this I have)

I think I’ve gotten this out of my system for now. Sorry to waste valuable Internet space on this, but maybe some of my experiences will help someone else someday. Someone with That Whose Name We Dare Not Speak.